Because the housing for the UVA Kluge Rehabilitation Center was shut down, we decided to stay at the Holiday Inn. They provide a discount for patients and we have completed a scholarship application and hope to receive reimbursement. Reagan has therapy Tuesday, Wednesday and Thursday every week in August.
Knowing what to expect, I hoped this week would be easier than it was. Reagan was excited to see everyone again and knew exactly what to expect when the new cast was being made. Unfortunately, the fun quickly turned ugly when she realized she would be wearing the cast for a month. Not being able to fall asleep either night in the hotel also made the experience harder because she was not only physically exhausted, but also emotionally exhausted because her brain was working harder than usual. If you remember from last time, the therapists said constraint therapy is exhausting because the brain and body are having to work harder to really focus on using the parts of the brain and muscles that don't normally get used. Both therapists were very happy to see the positive progress from the Botox treatments and were hopeful that we could build enough muscle throughout the next month to keep some of the improved function even after the Botox wears off.
On Day One Reagan met with Ms. Ruth and Ms. Judy and had her new cast made. She was very excited to have a thumb this time! She also completed several assessments to determine her "going in" position on the therapy evaluations. This involved several bimanual activities including making tea for everyone! We also spent some time riding on a bike outside, playing on the swing and watering plants in the greenhouse. After our therapy session we went to the Bounce-and-Play and she met some new friends and played for several hours. She was very excited about the new jaguar print co-band that she was able to use for her cast. 
Reagan had a really hard time falling asleep the first night so we had a tough morning on Wednesday. After going to Michael's to choose pots to paint at therapy, I drove the backroads of Charlottesville and she sleep in the car. We met with Ms. Ruth and Ms. Judy at noon on Day Two and started therapy with lunch. It's amazing how much time that can take when Reagan has to do every step from finding spoons, to opening her Mac and Cheese and following all the directions to put it in the microwave. One thing I have learned is that everything can be therapy if you focus on it. It always takes me a few days to slow down and let her do everything. It's a great feeling when you realize you don't have to be in a hurry and if it takes 5 minutes to pull the top off the mac and cheese that's ok. We also spent time mixing pink paint (they only had red and white so it was a great learning experience and therapy) and then painting the two pots we purchased. She plans to finish painting and decorating them and putting plants from the greenhouse in them next week when we go back. 
After therapy we went to the Downtown Mall / Pedestrian Walk and visited the Virginia Discovery Museum. We went last time we were in Charlottesville and Reagan loved the interactive activities there. She met several friends and played dress up, pushed the letters in the hallway and played in the pretend Panera. She also spent time feeding Star (her new unicorn). I tried to focus on slowing down and giving Reagan time to do everything herself. She loved putting Star in the stroller and pushing her around...which is really hard with a cast on one hand.
Reagan got a lot of compliments on her jaguar cast and when people asked, "what happened" she would say, "I got a bug bite" and show them the huge bug bite on her leg. Honestly, this bug bite almost sent us to the hospital. It was HUGE...I could have sworn it was a Taradactyl bite. Needless to say this was super confusing to most people. But when they asked, "why do you have a cast on?" She would sheepishly respond, "my mom told me we have to make lefty stronger." Which probably just confused people even more. I haven't quite figured out the perfect response for her...but I'm sure I will by the end of the month. We enjoyed a really nice dinner outside at an Italian restaurant. I gave Reagan all the pennies in my wallet with the one condition that she had to throw them in the fountain next to our table with her left hand. She did a great job and almost all of them ended up in the fountain!
Day Three we spent time with Ms. Sue and had a great time making old fashioned ice cream. She got out all the utensils and ingredients, got the ice from the ice maker, stirred the ingredients together, and churned the ice cream maker from Sue's Grandmother (shown in the lower right of the picture). Although she had a great time making the ice cream, she was very frustrated by her spoon when it came to eating it and decided she didn't want any ice cream. And although it took a lot of coaxing, she did help clean up all the tools she used.
Although an emotionally exhausting trip for both of us, Reagan worked very hard and overall it was a good week. I did see an interesting shift, however, in the way Reagan approached the experience. In March Reagan got frustrated but I found that she fought trying the activities and was more stubborn going into the activity. This week, instead of being frustrated and not trying an activity, I found she got frustrated after she tried and couldn't do it. This was especially the case when trying to eat. I noticed at lunch today as she was trying to eat mac and cheese with a spoon she kept eyeing a woman who was watching her struggle. She got very angry and refused to eat. I find the shift interesting because cognitively I think she is recognizing her challenges in a different way and is more socially aware of people watching her (whether it's a stranger, her mom or her therapists). Last time when people asked what was wrong with her arm she would tell them the cast was to make lefty stronger. She believed it unequivocally. Now she is trying to talk through why she shouldn't have to wear the cast with me whereas last time she cried and got frustrated and said she didn't want to do it, but didn't question why she needed to do it. She even said yesterday, "mom, I promise if you take the cast off I"ll just do everything with lefty." She has such a precious spirit and I'm trying so hard to delicately help her achieve more without feeling like there are things she can't do. It's such a hard balance. And as with many other activites I find being a mom so much more difficult than I EVER imagined.
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